How to go From Surviving to Thriving

From Surving to Thriving

My daughter, Katie, serves on the conference committee and designed this brilliant image for it. I couldn’t be more please with all the service she gives to the BIAU.

This was the theme for the 2015 Brain Injury Alliance Conference and Alison Delgado’s, is a great example of someone going from surviving to thriving. She was the keynote speaker and her story was inspiring and her advice was excellent:

“For medical personnel:

  • Know your patient and their loved ones—it will keep you motivated as you work with them, even on the tough days
  • Know their ultimate goals so that you can look beyond your own
  • Get their loved ones involved—it will empower both them and the patient

For loved ones:

  • Remain positive, even on the tough days and don’t be ashamed to lean on other loved ones-Escalator
  • Remember to take care of yourself
  • Ask questions, stay involved

Patients:

  • Suddenly, everything has changed
  • Set goals, work toward them each day, ask for help
  • No therapy is beneath you
  • It may take days, months, years—but if you keep working, you can always achieve more than what was expected

For Everyone:

  • Hope
  • Pray
  • Love
  • Believe in miracles”
2015 conference picture

2015 BIAU Conference

I loved how straight forward Alison spoke. If you haven’t joined a support group or attended a conference relating to whatever condition you or your loved one is dealing with, I highly recommend it. I’m always trying to learn how to be a better advocate and caregiver. The support groups and conferences provide good information which supports and helps families and individuals. This conference is designed for people with brain injuries, their families, doctors, nurses, therapists, educators, case managers, social workers and other service providers. The icing on the cake which comes from attending the conferences is to have the opportunity to meet people dealing with similar issues and to mingle with people who have helped us with recovery from the past. Some of whom we only see now at the conference. It reminds me of how grateful I am for those health care professionals who not only helped Mark survive, but thrive.

Forging New Frontiers

We can learn from pioneers’ examples as they made their way into unknown territory. In July, Utah honors pioneers not only for their difficult trek here, but for their hard work and devotion to establish a new way of life, which opened up many possibilities for all who live here. We appreciate what they built, shaped and created in this beautiful state.

As we are innovators and developers of our own lives, we are like the pioneers of the past. Circumstances often force us to break new ground, hopefully leading the way to a better life. Sometimes we’re unprepared to meet our challenges, but as we initiate faith and courage we discover new frontiers. In this sense, we are modern-day pioneers forming and constructing, with anticipation, something good from a hard or bad situation.

When I reflect on how the pioneers made their trek west, I see wisdom and foresight in their method. I’ve listed five of their practices that could benefit our own journey.

Pioneer Trek Reinactment

Pioneer Trek Reinactment

1) Gather in groups. The pioneers organized themselves in companies and leaders were assigned to each group. They rallied around each other, helping one another. They needed and depended on each other for survival. They mourned and rejoiced together. It’s hard to imagine a pioneer making the trek on their own. Likewise, I can’t imagine making my journey without the advice, love and support of others. Just as the pioneers circled their wagons for protection at night, we should encircle ourselves by embracing those around us who are willing and wanting to help.

2) Consider advice from a scout or forerunner. Usually, a couple of men rode on horses ahead of the group to explore the best possible route and to help prepare for obstacles that might be in their way. I think of doctors, nurses, therapists and other caregivers who have knowledge or experiences similar to mine as mentors, guides and/or pathfinders. Their advice is valuable when navigating on foreign ground.

3) Allow for respite time. The pioneers walked or rode many miles every day except on Sunday for months. Logically, if they would have traveled on Sunday they may have reached their destination sooner, but they revered the Sabbath Day. I see the wisdom in taking time to rest from our everyday routine, yet it can be hard sometimes to stop and take a break because our eyes are set on the goal and we don’t feel like we have the time to stop. Whether we realize it’s needed or not, we feel refreshed and renewed after respite.

4) Develop courage, faith and hope. I think pioneers had to have these three traits, but did they always have them? Reason tells me no. They were regular human beings, just like you and I, with hardships. I feel fortunate that my difficulties are not like theirs and I appreciate their example of perseverance. I’m encouraged by their dedication as they worked daily developing courage, faith and hope. Hopefully some days were easier than others, when these traits came more naturally.Their endurance developed them into the strong pioneers they were. Likewise we become stronger as we develop courage, faith and hope on the days when it doesn’t come naturally.

5) Your best is good enough. The handcart plan was for seventeen miles a day for sixty days, but none of the ten companies could reach that goal. They must have felt despair and frustration from the slow journey of seven to fifteen miles on a good day, making the trip tedious and wearisome. Giving their best was good enough, so it must be the same for us. It may take longer and be harder than we expected, but if we are persistent in doing and/or giving our best, it will be good enough.

Pioneer Trek Reenactment

Pioneer Trek Reenactment

The pioneers didn’t know how or when their journey would end. Similarly, we don’t know how or when ours will either, but if we follow their example, we can also forge new frontiers.

What have you learned from the pioneers’ examples?

As Long As There Is Light

Light for others

Whenever I see my own light dimming making my world feel lonely, dark and scary, someone comes along and brightens the way for me. I’m grateful for family and friends who give me light which helps me conquer the darkness. I hope you have like persons in your life who share their sunshine and rekindle yours. I do believe as long as there is light, there is hope and there is a way. My best days are the ones I can be the light for others.

Finding Hope

Hope1I’ll bet most of us have had times in our life when we felt our circumstances were hopeless and the entire world seemed to be shouting “no” at us. In my article, Renewed Hope, I wrote about one of the darkest times in my life. After six weeks of worrying and watching Mark go through one crisis after another, any one of which could have taken his life, I got discouraged and wondered if my hope in his life and recovery was misplaced. The doctors, nurses and therapists were not hopeful and gave no encouragement.

I took my questions and concerns to a higher physician and the only one who really knew what Mark’s outcome would be. I received confirmation that my hope was not misplaced and I would see miracles. However, I felt it was important to talk to Mark about my concerns. In the previous six weeks I thought if Mark died—I would also. I couldn’t imagine anything worse. I thought it would be impossible to live without him or raise our two children alone. It would have been awful and thankfully our path didn’t go that direction, but I also realized through this experience that death wasn’t the worst thing that could happen. I needed to let Mark go in my heart if it was his time. Living had to be his choice and not mine. It took time, but I finally concluded that living had to be the best option for him and not just for me.

Five things this dark experience taught me:

  • Learn to accept what I cannot change. Accepting doesn’t mean giving up or surrendering to the situation. It means to seek knowledge and understanding of all the possibilities and giving my greatest effort to accomplish what’s best.
  • Pray for divine help and realize Gods understanding of the circumstances is better than mine.
  • Find satisfaction in knowing I did my best to make the situation better. The outcome may be different from what I expected or hoped for, but realizing I gave my all makes it easier to accept.
  • Find a purpose for the circumstances and make something valuable out of it. For me sharing our story and experience with the hope it’ll encourage someone else gives it purpose.
  • Do not compare my life to others. Doing this always leads to discouragement and instead of being grateful for what I have, I’m wishing for what someone else has. It’s a complete waste of time which is better spent appreciating what I do have.

How do you overcome hopelessness?

 

Renewed Hope

I love a new year and the feeling it brings of new beginnings. Ambition for improving ourselves and our circumstances is prevalent this time of year. Other times we may have to hit rock bottom before we gain a strong desire to repair, restore or restart our life, but with a new year it seems to come automatically.

Hang OnDuring the time Mark was comatose after our car accident I hit rock bottom. I questioned my faith and at times wonder if my hope in Mark’s recovery was misplaced. The doctors, nurses and therapists were not optimistic and when I was hopeful, they said I was unrealistic. One even stated I looked through rose colored glasses. I understood their job was to keep him alive, but without hope for improvement, life was beginning to seem worse than death. After two life-saving surgeries, many tests with one health crisis after another and five weeks of Mark being in a coma, I realized this was no way to live. In my darkest hour I knelt at my bedside in prayer looking for direction. I asked God why my prayers weren’t being answered. Was I lacking faith? What did I need to do differently? I was exhausted and wondered if this nightmare would ever end. I was worried I didn’t have the strength to endure life this way. As I knelt in prayer looking for inspiration, in my despair a question came to my mind. Do you believe in miracles? Yes, I believe in miracles! Then assurance came —If you believe, you will see miracles wrought before your eyes. Remember, some miracles take time.

The next morning I arose with encouragement and the insight to have a heart to heart conversation with Mark. Eagerly I fixed breakfast for the kids, then got myself ready for the day. After breakfast, I hurried Christopher and Katie out the door for school. I reminded them of our new (five week old) after school schedule for them to go next door to play until I returned home from the hospital. As they ran off I shouted, “I love you and I’ll see you before dinner.” Saying “I love you” before every departure became a new habit. I knew for certain how fragile life is and I always wanted them to know of my love and to be able to tell them became a privilege, that their Dad no longer had. You never know when it will be your last chance to say it.

Shortly after the kids were gone, my mother picked me up and drove me 60 miles to McKay-Dee Hospital. This was another part of our new schedule. Since our car was totaled and my collarbone was broken, I couldn’t drive myself. I hated being dependent on so many people, but I was grateful for their willingness to help me. On our way to Ogden, Utah, I told Mom about the doctor’s phone call from the night before. He informed me of Mark’s liver infection and ask for my permission to do a biopsy and treat treatment it.

Mom usually stayed with me, but this was not going to be like our regular hospital visits. The nurse stopped us just outside Mark’s room.  After giving us the report of how the night went with my brother at Mark’s bedside, she explained that due to his liver infection and high white cell count, he was in isolation. “This treatment is worse than chemotherapy,” she said. “Only one person will be allowed in his room at a time and you must wear a surgical mask over your mouth, a disposable gown over your clothes, surgical gloves and shoe covers. Wait here and I’ll go get you the items.”

Filled with more worry, I looked at Mark through the big glass window and noticed the new medication dripping in his IV. When the nurse returned, I put on the required paraphernalia. I looked and sounded like a paper doll walking into his room with the blue paper shoe covers and paper gown. I scooted the chair around so I could face Mark as I took a seat next to him. I held his hand, but it felt different with the gloves on. Now I was not only missing the sight of his eyes and the sound of his voice, but the feel of his skin.

“Mark”, I said muffled through the mask. “Can you hear me?” I felt water filling my eyes so I blinked hard and a tear escaped. He could not speak, but his spirit reassured me he could hear so I continued. “I’m sorry you are so sick. I’m sorry about the car accident and I’m sorry you got injured. I wish I could change that day. I wish I could trade you places. I couldn’t bear to let you go. Have I been wrong? Have I willed you to stay here? Are you stuck between heaven and earth? You’ve fought a good fight. Are you tired of fighting? I love you Mark. Christopher and Katie love you. They miss you and ask every day when they can see you and when you’re going to come home. I don’t know what to tell them. If you can’t come home I will accept it. If it’s time for you to leave us and go to your heavenly home we’ll be okay. You don’t have to keep fighting for us.”

Those words were the hardest yet most humble and heartfelt words I’d ever spoken. His spirit reassured me he was on his way back, encouraging me to not give up hope, he would be coming home. His spirit filled mine with renewed hope.

Many authors write about psychic powers in fiction books, but this is real life. Our spirits actually communicated and it was a magnificent and enlightening experience. The first of a few we had during the time he was in his coma.

A few days after the intense treatment for liver infection, Mark’s white cell count decreased and his red cell count increased. He was winning the battle of the cells, which confirmed my renewed hope was not misplaced. While in his coma, Mark’s body was repairing from the inside so his health could be restored and he could restart a new life. Sometimes we just need hope and a reminder to hold on—pain ends.

The Benefits of Support Groups and Conferences

BIAU Conference

Photo from Brian Injury Alliance of Utah Newsletter BIAU 2013 Conference

I haven’t forgotten the first time I was encouraged to attend a class on understanding brain injury at the hospital. I thought, no way. I’m overwhelmed as it is and I don’t need one more thing to do. Besides I’m dealing with the effects of brain injury on a daily basis and this is not a class I want to sign up for.

I went to my first class kicking and screaming inside, I don’t want to be here! I don’t want to deal with this injury nor do I want my husband to have it. All the wishing it wasn’t so and disliking the situation didn’t change the fact that Mark had a traumatic brain injury and I had to learn to deal with it. I came to the conclusion I’d better learn all I could to help prepare me for the time he woke up from his coma. I wish I could say the things I learned in those classes made it less frightening, but I don’t think it did. However, I did find comfort in being in a room with others who were dealing with the same devastation I was and the information was helpful.

Over the past twenty-three years Mark and I have continued to go to support groups and the annual conferences. We haven’t gone every year, but when we do go we benefit from other peoples’ experiences and knowledge, as well as the resources that are shared. Now days it’s easy to look up information on the internet, but then you’re missing out on connecting with real people. Whatever health issue you or your loved one is dealing with, I hope there is a support group, classes and conferences that relate to the problem. The human experience plus the information and resources I’ve gained through these avenues has made the time invested worthwhile.

As an example, the Brain Injury Alliance of Utah had their annual family and professional conference on October 24, 2014. This year it was held at the Ogden Eccles Conference Center. The conference was full of information, with two sessions offering four classes to choose from. It began at 8 am with registration and a light breakfast. There was an hour to eat, look at exhibits from the sponsors and pick up information from the resource tables. Always a favorite is the silent auction. There were tables full of homemade items, books signed by the author and even airline tickets to bid on. The silent auction and resource tables last throughout the day and can be viewed and bid on between the sessions, with the final bidding after the second session.

This year’s conference theme was Life Will Go On. Every year the theme is different and after breakfast a keynote speaker bases their talk on the theme before breaking up into the first session of classes. After the first session there was a delicious lunch and recognition awards given to five individuals for their contribution to the brain injury community. The categories were: Survivor of Brain Injury, Family Member, Educator, Professional and Lifetime contribution.

After lunch and the awards, the second session begins. Afterwards, the final bids are collected for the silent auction. This is a favorite at the conference and all of the raised funds from the auction go to serving the Utah brain injured community.

Last, but not least, there is a panel discussion. Many people do not stay for this last hour, however, I have always found it to be very informative and I enjoy the interaction of the discussion. The panel usually consists of four to six people who sometimes are all professionals or family members to discuss the conference theme. I’m grateful for the knowledge shared by their experience and take away so much good information. I leave with renewed hope and support from the conference. On a daily basis I can be consumed with worry and overwhelmed with responsibility and my world can become inward and small. It’s helpful to get out and see others in a related situation and it always builds a desire within to reach out and help another. There is strength in numbers and encouragement that comes from being with others who are dealing with the same chronic illness or injury.

Miracles Happen

Hope brings MiraclesSome miracles take time and aren’t always what we hoped for, nevertheless, they are still miracles. Mark’s life is a miracle, but it’s not the full recovery I hoped for. I was discouraged and hurt by doctors, nurses and the therapist who tried continually to squashed my hope with their negative statements and statistics because they didn’t believe I was facing reality. Concerning Mark’s recovery I was told I looked through rose colored glasses because I remained optimistic and hopeful. Twenty-three years later and with more life experience, I understand and have forgiven them for their pessimism. They were doing their job and I was adjusting the best I knew how with the strong feelings I had about his recovery. I’ve thought a lot about “false hope.” As shocking as the statement was to me, I recognize the spot the therapist was in, but that doesn’t mean I agree or like the statement. I truly appreciate their knowledge, which kept Mark alive, but couldn’t understand their lack of hope for improvement. I feel without hope life loses purpose. I closed my Sunday Story asking if there was such a thing as false hope. I loved Laura Nordfelt’s comment:

“This is a thought provoking question for me now. I realize that for the first year, I don’t think I placed any expectations on Greg’s recovery. I lived one day at a time. Go to the hospital. Go to appointments. Work with him on his therapy. Go to my job. Cook for him. Encourage him. Love him. Watch him nap. Watch him play brain games on his iPad. Go for walks up and down the street. I just went through the motions.

Then all of a sudden one day, he went to work for 3 hours. Pretty soon, it was 4 hours and so on. One day, he got his driver’s license and a whole new world opened up for us. Our lives began to take on a different meaning. Independence crept back in piece by piece.

I don’t think I ever had feelings that our lives would ever be the same because his physicians set me up from the beginning with cautious expectations. So hope? I tried to set the bar low and decided we would be grateful for whatever we were given. We (Greg) worked as hard as two people could possibly work with all the tools that the therapists had in their boxes and any more we found along the way. I believe it helps tremendously that we are hopelessly optimistic people! Just try and tell us we can’t do something, nope, not having it!”

Thank you, Laura, for sharing Greg’s miracle. I think being optimistic, hopeful and having faith is the most important tool in the box. It is the fuel that drives us to work hard for something. Twenty-three years ago, I set the bar high. Part of it was my lack of experience with life, but most of it came from being an optimistic, hopeful person full of faith. A person who proudly looks through rose color glasses and realizes there is a higher being in charge of life. I’m grateful I set the bar high and I’ve never regretted it. Have I been disappointed? Yes! But I wonder where we’d be today if I didn’t have high expectations and a belief that only God knows all.

We are all on a different journey with different experiences, however the feelings and emotions are the same. No one should tell another how they should feel or react to a given situation, especially when it’s a traumatic experience.

What miracles have you witnessed?